The ESMO Palliative Care initiative

1. The ESMOPalliative Care initiative Nathan I Cherny Shaare Zedek Medical center Jerusalem, Israel

2. ESMO PC/SC Working Group • Established 1999 by ESMO national representatives • Chair: Prof Raphael Catane • Activities • Policy • Education • Research • Quality improvement

3. Palliative Care Working GroupActive members

4. Integration of oncology and Palliative Care: ESMO view • Medical oncologists role is to coordinate patient care at all stages of the disease along with other relevant disciplines • Increasingly oncologists are being marginalised because the profession is seen as “chemotherapists” • To maintain a central coordinating role oncologists need to be perceived as “cancer specialists” with a breadth of expertise, perspective, and commitment.

5. The scope of specialist cancer care In advanced cancer • Palliative anti tumor treatments • Symptom control • physical • psychological • Family support • Home care • End of life care Unless oncologists take a lead role in the coordination and implementation of these aspects of care, we undermine our claim to be “cancer care” specialists.

6. Policy

7. Definition of Terms • Supportive Care • care that optimizes comfort, function and social support of patient (and family) at all stages of illness • Palliative Care • care that optimizes comfort and function and social support of patient (and family) when cure is not possible • End of Life Care • palliative care when death is imminent

8. PotentiallyCurable Non-Curable Terminal Diagnosis Supportive Care Palliative Care EoL Care

9. Curable disease: Cured Supportive Care Supportive Care Palliative Care Curable disease: Relapsed EoL Supportive Care Palliative Care Curable disease: Failed EoL Incurable disease Palliative Care EoL Care Integration with Disease Evolution

10. “The Role of the Oncologist in the Provision of Supportive and Palliative Care” • The Medical Oncologist must be skilled in the supportive and palliative care of patients with cancer and in end-of-life care. • It is the responsibility of the MO to assess and evaluate physical and psychological symptoms and to ensure that these problems are adequately addressed. • The delivery of high quality supportive and palliative care requires co-operation and coordination with: • physicians of other disciplines • (including radiotherapy, surgery, rehabilitation, psych-oncology, pain medicine and anesthesiology, palliative medicine etc) • paramedical clinicians • (including nursing, social work, psychology, physical and occupational therapy, chaplains and others).

11. Supportive and Palliative Care training for Medical Oncologists • Medical Oncologists must be skilled in the supportive and palliative care of patients with advanced cancer. • 9 core skills must be incorporated.

12. 1.The oncologic management of advanced cancer • Medical oncologists must be expert in the appropriate use of anti tumor therapies as palliative techniques when cure is no longer possible. • This includes specific familiarity with key concepts • patient benefit • quality of life • risk/benefit analysis

13. 2. Communication with patients and family members Medical oncologist must be skilled in effective and compassionate communication with cancer patients and their families. Specific skills include: • Explaining diagnosis and treatment options • Disclosure of diagnosis • Explaining issues relating to prognosis • Explaining the potential risk and benefits of treatment options • Counseling skills to facilitate effective, informed decision making. • Explaining the role of palliative care • The care of distressed family members: fear, anticipatory grief, bereavement care • Convening of family meetings

14. 3. The management of complications of cancer Medical oncologists must be expertin the evaluation and management of the complications of cancer including: • Bone metastases • CNS metastases • Neurological dysfunction: tumoral, paraneoplastic and iatrogenic • Liver metastases and biliary obstruction • Malignant effusions • Obstruction of hollow viscera • Metabolic consequences of cancer • Anorexia and cachexia • Hematologic consequences • Sexual dysfunction

15. 4. Evaluation and management of physical symptoms of cancer and cancer treatment Medical oncologists must be expert in the evaluation and management of the common physical symptoms of advanced cancer including: • Pain • Dyspnea and cough • Fatigue • Nausea and Vomiting • Constipation • Diarrhea • Insomnia • Itch

16. 5. Evaluation and management of psychological and existential symptoms of cancer Medical oncologists must be familiar with the evaluation and management of the common psychological and existential symptoms of cancer including: • Anxiety • Depression • Delirium • Suicidality and desire for death • Death anxiety • Anticipatory grief

17. 6. Interdisciplinary care • Medical oncologists must be familiar with the roles of other professions in the care of patients with cancer and with community resources to support the care of these patients.

18. 7. Palliative care research Medical oncologist must be familiar with research methodologies that are applicable to patients with cancer including: • Quality of life research • Pain measurement and research • Measurement of other physical and psychological symptoms • Needs evaluation • Decision making research • Palliative Care audit

19. 8. Ethical issues in the management of patients with cancer MOs must be familiar with common ethical problems and ethical principles that assist in their resolution: • Related to disclosure of diagnosis and prognosis • In decision making: paternalism, autonomy, informed consent • The right to adequate relief of physical and psychological symptoms and its implications • Consent: informed, uninformed • Ethical issues at the end of life • Foregoing treatment • Euthanasia, assisted suicide

20. 9.Preventing Burnout • Medical oncologist must be familiar with the symptoms of burnout, the factors that contribute to burnout and strategies to prevent its development.

21. Minimal requirements palliative care in cancer centers 1 • Patients should be routinely assessed regarding the presence and severity of physical and psychological symptoms and the adequacy of social supports • When inadequately controlled symptoms are identified they must be evaluated and treated with the appropriate urgency • Cancer center must provide skilled emergency care of inadequately relieved physical and psychological symptoms.

22. Minimal requirements palliative care in cancer centers 2 • Cancer centers must ensure an ongoing program of palliative and supportive care for patients with advanced cancer who are no longer benefited by anti-tumor interventions. • Cancer centers should incorporate social work and psychological care as part of routine care. • When patients require inpatient end of life care, the cancer center staff either provide the needed inpatient care or arrange adequate care in an appropriate hospice or palliative care service.

23. ResearchESMO Palliative and Supportive Care Survey:

24. AIMS • to evaluate • the degree to which ESMO oncologists are involved in the management of advanced cancer • the degree with which they collaborate with PC clinicians • their personal involvement in PC • their attitudes to PC

25. Survey tool • Demographics • age • sex • experience • place of work • involvement in advanced cancer

26. Survey tool 2 • Collaboration with SC/PC • 7 items • Practice of SC/PC • 16 items • Attitudes • 24 items

27. Demographics 1 • N=895/3300 • European 82.4% • Sex: F 194 (21.7%) M 701 (78.3%) • Median age: 45-49 • Median experience: 15-19 years

28. Private oncology practice 167 18.7% Community hospital based 176 19.7% Teaching hospital based 334 37.3% Comprehensive cancer center 185 20.7% Other………………………… 33 3.7% Practice Type

29. None 4 0.4% A small proportion 78 8.7% A substantial proportion 615 68.8% Most of my practice 197 22.0% Proportion of my practice involved with advanced (incurable) cancer

30. Key findings • Most medical oncologists are clinically involved with patients with advanced cancer • The attitudes of responding members correspond closely with the proposed ESMO policy statements relating to Supportive Care/Palliative.. • oncologist role • education • integration of SC/PC in cancer centers

31. Attitudes • Most MOs believe that • oncologists should coordinate care the care of patients with advanced cancer including EoL care • SC/PC should be initiated in all patients when need is identified • oncologists should be expert in physical and psych SC/PC • all cancer centers should provide SC/PC

32. Discrepancy Between Attitude and Practice • Although, 88.4% agreed medical oncologists should coordinate the care of cancer patients at all stages of disease including end of life care... • Actual practice seems much less... • 43% commonly coordinate the care of cancer patients at all stages of disease including end of life care. • 39% commonly coordinate meetings with the family of dying patients • 11.8% manage delirium

33. often A social worker 47.9 A home hospice (palliative care) team 37.8 A palliative care medical specialist 35.1 A psychologist 33.3 A palliative care nurse specialist 31.7 An inpatient hospice 26.4 A psychiatrist 14.9 PC Collaboration

34. Attitudes: No Consensus Agree + Disagree + 52.8 33.8 37.5 36.3 35.2 42.0 55.6 41.8 39.4 39.2 I received good training in PC during my oncology fellowship (residency) I feel emotionally burned out by having to deal with too many deaths. Most MOs I know are expert in the management of the physical and psychological symptoms of advanced cancer. A palliative care specialist is the best person to coordinate the palliative care of patients with advanced cancer. Palliative care (or Hospice) physicians don’t have enough understanding of oncology to counsel patients with advanced cancer regarding their treatment options.

35. Program Development Incentives

36. Committee for education • The incorporation of palliative medicine in the curricular requirements for ESMO certification and accreditation. • Inclusion in the ESMO examinations questions on all aspects of cancer palliation • Special Advanced training Fellowship Programs designed to focus on research and clinical application of palliative Care.

37. Designated centers of excellence • Incentive program • Encouragement through the identification and support of model programs • Clinical programs accredited as “center of excellence” will be supported as foci of education and research and will be endorsed as centers of excellence in integrated care.

38. “Designated Centers” Program BENEFITS: Title=Recognition PC Fellowships Special Grants

39. The Center provides closely integrated oncology and palliative care clinical services The Center is committed to a philosophy of continuity of care and non‑abandonment The Center provides high level home care with expert backup and coordination of home care with primary cancer clinicians The Center incorporates programmatic support of family members. Criteria for “Designated Centers”

40. The Center provides routine patient assessment of physical and psychological symptoms and social supports and has an infrastructure that responds with appropriate interventions in a timely manner The Center incorporates expert medical and nursing care in the evaluation and relief of pain and other physical symptoms The Center incorporates expert care in the evaluation and relief of psychological and existential distress Criteria for “Designated Centers”

41. The Center provides emergency care of inadequately relieved physical and psychological symptoms The Center provides facilities and expert care for inpatient symptom stabilization The Center provides respite care for ambulatory patients for patients unable to cope at home or in cases of family fatigue Criteria for “Designated Centers”

42. The Center provides facilities and expert care for inpatient end‑of‑life care and is committed to providing adequate relief of suffering for dying patients The Center participates in basic or clinical research related to quality of life of cancer patients The Center is involved in clinician education to improve the integration of oncology and palliative care Criteria for “Designated Centers”

43. Selected “Designated Centers” • Velindre NHS Trust, Cardiff UK; Ilora Finlay • AZ Middelheim, Antwerp Belgium; Dirk Schrijvers • Istituto Oncologico della Svizzera Italiana, Ospedale San Giovanni, Bellinzona Switzerland; Piero Sanna • Kliniken Essen-Mitte, Essen Germany; Marianne Kloke • Vicenza General Hospital, Vicenza Italy; Leonardo Trentin • Cork University Hospital, Wilton, Cork Ireland; Oscar Breathnach • Klinik Dr. Hancken GmbH, Stade Germany; A. Scherpe • O.D.O. AVAPO, div. Oncologia medica, osp. SS. Giovanni e Paolo, Venezia Italy; Ardi Pambuku

44. Future Plans

45. Plans • Collaborative program development • EAPC • MASCC • ASCO • India • Eastern Europe • Education • India • Pakistan Mexoco • Eastern Europe • Routine ESMO courses • Research • Communication practices • Defining standards for “BSC”